This story astounds me. It seems that the judge hearing the Virginia challenge to the health reform law has ties to both the Virginia Attorney General who brought the case, and a Republican online communications firm called Campaign Solutions, from which he has been receiving "dividends." Dividends? Really? Since when does a communications firm pay dividends? I think there's another word for this.
If these facts are true, this judge should have recused himself as soon as the case was filed. If he rules in the State's favor, it will look an awful lot like bias. Judges should know better. Jennifer
Friday, July 30, 2010
Weight Part 6
This was supposed to be an exciting, triumphant week with my trip to Washington to speak at the National Press Club about my experience as a patient. I feel anything but triumphant. I came home and watched the video of the event, including my portion. The first time I watched myself, all I could see was how I looked. There were black rings around my eyes -- I look like a raccoon, although I know it's nothing more or less than intense exhaustion. And I am so, so fat. My eyes and mouth look like tiny fissures in a swollen and misshapen face. And my teeth are brown from too much illness, too much medicine. I was shocked at how awful I looked. After I got past that shock, I watched it again a couple of times. I did okay -- I made the audience laugh a couple of times, and I told a story in which I triumphed in the end, becoming a voice for people like me, with chronic illnesses. People came up to me afterwards and said I was a hero -- really. I don't feel like a hero.
My dad emailed me saying I looked exhausted and nervous but got my point across.
And so we have this week's theme: Nothing I do is ever good enough. The voices in my head keep saying it's not enough. Never enough.
Just when I was about to leave for yesterday's shrink visit, the phone rang and it was a very large foundation to which I've applied for a grant that would fund the creation of chronic illness care management training materials, along with the first four trainings around the country. "Do you have time for a couple of questions?" What do I do? What takes priority? "Sure," I said.
She wanted to know what qualifies me to write these materials. Um, let's see. I've been a chronically ill patient for 35 years. I have worked with literally thousands of patients with chronic illnesses. And I (along with the University of Michigan Center for Managing Chronic Disease) just finished a chronic illness survey, so we have data from 1800 patients and caregivers that tell us exactly what patients need help with. She wanted to know who would conduct the trainings. I would, to start with, and we would use a train the trainer model. And hopefully (if you give us the money we've asked for), we can hire Nicole full-time when she finishes law school and then she can do trainings, too. But can you pull this off, disseminating these materials nationwide? Yes, we can, I said. I rattled off other organizations who refer patients to use from all over the country. I threw in the fact that I spoke at the National Press Club the day before. She congratulated me on how well Advocacy for Patients is doing. But by the end, I felt like we are just too small and she doesn't believe I can pull this off.
But nothing I do is ever good enough.
So I got to my shrink 20 minutes late, rush and agitated and unhappy. I did my best to focus, but there was so much going through my mind. Everybody wants something. I have a meeting on my calendar that I know will waste my time, but I have to keep a client happy. I traded emails with a woman who is in desperate need of help, but she's also so angry that she tells me repeatedly not to bother calling her if I'm going to tell her there's nothing I can do. I spent an hour on the phone with a woman who's in a terribly difficult position, but we don't do medical malpractice, so I tried to find her resources. I emailed her a bunch of information and she emailed me that she feels so lost.
Nothing I do is ever good enough.
I never settled down enough to close my eyes and see what the blueberry jam girl is up to, or to hear the wisdom of my spirit guide. So she said, at the end, so the session would not be a total loss, "when you are a child and you're getting straight A's and the teachers say you're great and it's clear that you're very smart and you try to do everything right and your mother tells you you're a fat pig, you can never feel like anything you do is good enough."
My mother's voice is in my head and I hate it. Jennifer
My dad emailed me saying I looked exhausted and nervous but got my point across.
And so we have this week's theme: Nothing I do is ever good enough. The voices in my head keep saying it's not enough. Never enough.
Just when I was about to leave for yesterday's shrink visit, the phone rang and it was a very large foundation to which I've applied for a grant that would fund the creation of chronic illness care management training materials, along with the first four trainings around the country. "Do you have time for a couple of questions?" What do I do? What takes priority? "Sure," I said.
She wanted to know what qualifies me to write these materials. Um, let's see. I've been a chronically ill patient for 35 years. I have worked with literally thousands of patients with chronic illnesses. And I (along with the University of Michigan Center for Managing Chronic Disease) just finished a chronic illness survey, so we have data from 1800 patients and caregivers that tell us exactly what patients need help with. She wanted to know who would conduct the trainings. I would, to start with, and we would use a train the trainer model. And hopefully (if you give us the money we've asked for), we can hire Nicole full-time when she finishes law school and then she can do trainings, too. But can you pull this off, disseminating these materials nationwide? Yes, we can, I said. I rattled off other organizations who refer patients to use from all over the country. I threw in the fact that I spoke at the National Press Club the day before. She congratulated me on how well Advocacy for Patients is doing. But by the end, I felt like we are just too small and she doesn't believe I can pull this off.
But nothing I do is ever good enough.
So I got to my shrink 20 minutes late, rush and agitated and unhappy. I did my best to focus, but there was so much going through my mind. Everybody wants something. I have a meeting on my calendar that I know will waste my time, but I have to keep a client happy. I traded emails with a woman who is in desperate need of help, but she's also so angry that she tells me repeatedly not to bother calling her if I'm going to tell her there's nothing I can do. I spent an hour on the phone with a woman who's in a terribly difficult position, but we don't do medical malpractice, so I tried to find her resources. I emailed her a bunch of information and she emailed me that she feels so lost.
Nothing I do is ever good enough.
I never settled down enough to close my eyes and see what the blueberry jam girl is up to, or to hear the wisdom of my spirit guide. So she said, at the end, so the session would not be a total loss, "when you are a child and you're getting straight A's and the teachers say you're great and it's clear that you're very smart and you try to do everything right and your mother tells you you're a fat pig, you can never feel like anything you do is good enough."
My mother's voice is in my head and I hate it. Jennifer
Women Gain in Health Reform
The Commonwealth Fund says women have most to gain from the health reform law, mostly because they use health care services more than men.
This makes me worried about all the men who should be going to the doctor but aren't. Jennifer
This makes me worried about all the men who should be going to the doctor but aren't. Jennifer
Thursday, July 29, 2010
New Poll on Health Reform
People seem to be warming up to health reform as we start to see results -- new poll shows here. Jennifer
Tuesday, July 27, 2010
Me Streaming Live
Reminder: The Campaign for Better Care's forum on building better care is tomorrow, July 28 from 8:30 am to 11 am. The event will be streaming live here. I'm on the first panel, on patients and caregivers. I'm the patient! Enjoy! Jennifer
Monday, July 26, 2010
The 20th Anniversary of the Americans with Disabilities Act
How far we've come -- recognition of chronic illnesses as disabilities only a couple of years ago -- and how far we have to go. Read here for some of the accomplishments -- and some of the progress still to be achieved. And here is a nice opinion piece by Senator Tom Harkin. Next, a piece by/about the Obama Disabilities Adviser, Kareem Dale.
And check this out.
But why isn't this a bigger deal? Why did I have to search for a NY Times article instead of it being on the front page? Why isn't there a national holiday or a moment of silence or documentaries airing tonight showing the plight of the disabled in America? Why isn't this a really big deal?
Seems to me that we acknowledge the occasional ramp or grab bar and move on without fully recognizing how long it took us to get here -- only 20 years ago, in 1990, was the legal remedy for disability discrimination created, and only two years ago was chronic illness recognized for the first time. People may "get it" with respect to people in wheelchairs and people with seeing eye dogs, but they're a long way from "getting it" with respect to invisible chronic illnesses ("gee, you look good," they say, as if to ask if I'm really sick after all?).
So take today to think about how the ADA may help you -- and how it needs to evolve beyond where it is today. Jennifer
And check this out.
But why isn't this a bigger deal? Why did I have to search for a NY Times article instead of it being on the front page? Why isn't there a national holiday or a moment of silence or documentaries airing tonight showing the plight of the disabled in America? Why isn't this a really big deal?
Seems to me that we acknowledge the occasional ramp or grab bar and move on without fully recognizing how long it took us to get here -- only 20 years ago, in 1990, was the legal remedy for disability discrimination created, and only two years ago was chronic illness recognized for the first time. People may "get it" with respect to people in wheelchairs and people with seeing eye dogs, but they're a long way from "getting it" with respect to invisible chronic illnesses ("gee, you look good," they say, as if to ask if I'm really sick after all?).
So take today to think about how the ADA may help you -- and how it needs to evolve beyond where it is today. Jennifer
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